Friday, December 09, 2011

Another edition of the ChronicBabe blog carnival will be out soon, and it’s about holiday wishes when you live with chronic illness. Jenni Prokpy asks, “What are you asking Santa for? What do you wish for the people who care for you? What wishes have already been fulfilled this holiday season?”

Where to start?

In so many ways, I have everything I need and want: I will wake up on Christmas morning with a happy, healthy toddler who greets every day with joy.

But that doesn’t make for much of a blog post, does it?

For people struggling with infertility, which is even more difficult and heartbreaking this time of year, I wish for them a path to building the family they dream of that is as smooth and expedient as possible.

For the babies and families spending the holidays in the NICU, I wish for them that they surpass all the odds they face and are soon able go home, and that they have compassionate caregivers and supportive friends and family until that happens.

For people living with chronic pain, I wish for them relief, physically and emotionally, and substantive distractions if relief is not possible.

For patients living with chronic illness, I wish for them a sense of acceptance that does not mean resignation, and a sense of balance that tends to their bodies and still nourishes their minds.

For the people who love, care for, and often live with people with chronic illness, I wish for them that they truly know how appreciative we are of their efforts, and that they give themselves permission to take a break.

For parents caring of sick children in particular, I wish for them the grit to advocate, the strength to defer when necessary, and (some) solace in knowing that what might hurt right now often helps their children long-term.

For the doctors and researchers working on rare diseases, mine and so many others, I wish for them continued ingenuity, persistence, and necessary funding.

And for my daughter, among so many hopes and wishes, I wish for her that she experiences as much joy from life as she brings into it.

But since it is such a fundamental part of my life, as well as a fundamental part of my experience as a patient, it’s a question worth exploring further.

First, there’s the obvious. I write because as an author, editor, and an academic who teaches writing, it is my job.

I started writing this blog because I knew there must be other people like me out there, young adults living with chronic illness, and I wanted to find them. I’d always been the sick kid, the sick teenager, the sick twenty-something, and while I knew I might never meet someone with my rare set of diseases in real life, I knew wasn’t alone. And I knew that whether we’d been sick our whole lives or were recently diagnosed, whether our illnesses were life-threatening or life-altering, our individual symptom differences paled in comparison to the universals we struggled with: acceptance, denial, balance, guilt, etc.

I keep writing this blog because as my own journey has evolved from being a single graduate student to becoming a married person, an author, and a mother, I continue to learn and be inspired by those I find on similar paths, facing similar challenges. Careers, infertility, chronic illness, parenthood, patient-hood—the perspectives I encounter on all of this from readers and from other blogs are often invaluable.

I wrote Life Disrupted for similar reasons: I wanted to capture the experience of living with chronic illness as young adults. I am writing my second book because I started asking lots of questions about the evolution of chronic illness in American society that I didn’t know the answers to, and I realized I had to keep digging. (Still digging, but getting close to the end!)

But more simply, I write because it is what I have always done, for as long as I have memories. I write to process, I write to clarify, I write to learn.

As a sick child, I wrote because it was something I could do no matter how bad I felt or how many nights I was in the hospital. I wrote because I loved to read, and books kept me both distracted from illness and connected to something beyond myself. I wrote because I couldn’t always run or play, and I wrote because the voice I discovered in writing gave me an identity beyond that of the sick one. It gave me self-esteem and confidence when my body betrayed me over and over. I don’t know that I’d have gone to Georgetown, or interned at Washingtonpost.com, or done a lot of the things being a teenage and college-aged writer allowed me to do had writing not already been such an integral part of my self-concept.

I have no doubt I’d still be a writer even I hadn’t spent my whole life as a patient. It’s the way I make sense of my world, it is my instinct at every turn. But I wouldn’t have needed writing the way I did so often through the years, and I don’t know that I would appreciate its ability to build community and connect people the way I do. Writing is an extricable part of my personal life, but I’m fortunate that having a career based on writing isn’t just good for my spirit. Writing allows me to have a successful professional life despite my health issues, and though I didn’t consciously set out on this path for those reasons all those years ago, I am grateful to be here.